September 12th-18th is Invisible Illness Week. We all know that awareness is so important, and part of events for that week is the 30 things that affect us living with illness, and perhaps will help to gain a wee bit of understanding.

1. The illness I live with is: Endometriosis, fibromyalgia, interstitial cystitis, vulvodynia, vaginismus, lupus (SLE), bipolar disorder
2. I was diagnosed with it in the year: 2005, 2006, 2007, 2008, 2011.
3. But I had symptoms since: For years… .some my entire life, some just a few years…. most since my teen years at the latest.
4. The biggest adjustment I’ve had to make is: Listening to my body
5. Most people assume: That because I’m so young I can’t be so ill.
6. The hardest part about mornings are: Getting out of bed, whether it’s actually am, or just when I wake up.
7. My favorite medical TV show is: None, I can’t stand them! – The closest I get is Sons of Anarchy, where one of the women is a doctor.
8. A gadget I couldn’t live without is: laptop/pc
9. The hardest part about nights are: When it starts cooling off more my pain goes up.
10. Each day I take a minimum of 8 pills & vitamins….. usually I add at least 4 or 5….. in the form of pain management.
11. Regarding alternative treatments I: Don’t usually take them, but I am willing to consider them and talk to my doctors about them. I do have an alternative treatment I use to help my liver with all the other meds I take.
12. If I had to choose between an invisible illness or visible I would choose: I really don’t have an answer for this. They both come with different challenges. I think I’d stick with what I know.
13. Regarding working and career: I am currently unable to work. I’m trying to get my health back enough to work part time again.
14. People would be surprised to know: How it is so hard some days and so easy on others….
15. The hardest thing to accept about my new reality has been: losing hopes and dreams, and struggling to get them back.
16. Something I never thought I could do with my illness that I did was: have a biological child, and deliver vaginally.
17. The commercials about my illness: are terrible. At least the PSAs about lupus, done by lupus patients are ok.
18. Something I really miss doing since I was diagnosed is: signing
19. It was really hard to have to give up: sign language
20. A new hobby I have taken up since my diagnosis is: crocheting
21. If I could have one day of feeling normal again I would: go to the beach and play in the ocean with my kids.
22. My illness has taught me: that I can and will survive through a lot of difficult times!
23. Want to know a secret? Sex hurts, and I usually pay for it afterwards, but Johnny and I still have a sex life through it all. (This is HUGE when you understand how sex is (or rather ISN’T for most people with chronic illness who I’ve spoken to)
24. But I love it when people: Try to understand and learn about what we are going through.
25. My favorite motto, scripture, quote that gets me through tough times is: “Don’t cry because it’s over. Smile because it happened.” Dr. Seuss
26. When someone is diagnosed I’d like to tell them: Research. Lots of research. Advocate for yourself off that research. If your doctor isn’t treating you how you think they should be, get another opinion (3 years into diagnosed lupus I’m going to be doing this soon, if things don’t change during my next appt, as my lupus has become more active again). Listen to your body.
27. Something that has surprised me about living with an illness is: I’m not really sure…. I guess how much of a difference just having a name for what’s wrong with me changes things.
28. The nicest thing someone did for me when I wasn’t feeling well was: make a meal for me, or clean the bathtub for me so I could take a bath.
29. I’m involved with Invisible Illness Week because: We desperately need awareness and research and understanding!
30. The fact that you read this list makes me feel: so very grateful to you and for you being in my life!

3. But I had symptoms since: A lot of them have been since I was very young, the depression was when I was a teen… not even sure on the fibro and IC, they were hidden by the others.

4. The biggest adjustment I’ve had to make is: Ummm… so many adjustments… having to plan out even trips to the store and make sure I’ve covered the what ifs, because they’ll likely happen if I’m not ready. Wearing braces on my wrists (and sometimes other joints) when I have to drive more than a couple of miles (and even then I should be wearing them for driving). Not being able to just go places, either for errands or with friends.

5. Most people assume: that because I’m young and (mostly) look healthy I couldn’t possibly have as much pain as I do.

6. The hardest part about mornings are: … this is split into two parts… getting myself out of bed when I hurt, and managing to get myself some breakfast and something to drink so I can take my medications.

7. My favorite medical TV show is: Umm… I don’t have one lol! That’s one of the genres I just can’t seem to get in to.

8. A gadget I couldn’t live without is: Our laptop. When I’m stuck in bed or on the couch I have to have it because it is my link to the outside, and my friends and family help keep me from sinking into (worse) depression. It also provides excellent distractions in the forms of websites, forums, games and so on.

9. The hardest part about nights are: Not being able to sleep in one position all night very often, even with extra pillows and padding under and around me… I end up waking up to move at least two or three times a night, a lot of times I move more often than that.

10. Each day I take __ pills & vitamins. (No comments, please) Individual pills – Up to 14 or 16. Different meds/vitamins – 7 or 8

11. Regarding alternative treatments I: do a lot of research and have probably already heard of and looked at what you may be thinking to suggest. I appreciate the suggestions (as long as they are given with the right attitude… tellign me “This WILL cure you/stop your pain/take care of your symptoms” is the fastest way to get me to ignore you and blow off your advice), but don’t be upset or offended if I tell you that either I have tried it and it didn’t help, or I won’t try it because I’ve already looked into it. I do have a supplement I take when not pregnant to help my liver, and I will be possibly adding some other things into my treatments when I can safely add things again, but Johnny and I both do research, and I discuss things with my doctors before adding them, and I take research with me if it’s likely my doctors aren’t familiar with them, so we can make the best decisions for ME and MY HEALTH ISSUES.

12. If I had to choose between an invisible illness or visible I would choose: Visible

13. Regarding working and career: At this point just being a mom takes a lot out of me… I’m hoping to work at least parttime again, but full time is not an option, and part tiime is hard. If I can start working again it will definitely have to be something flexible that can be done out of our home.

14. People would be surprised to know: just how much has to be done for me some days that I can’t do on my own, vs just how much I do on my own some days.

15. The hardest thing to accept about my new reality has been: not being able to take care of everything I need, or the mental stuff…. there are days where I can’t communicate well at all because I’m unable to come up with words….

16. Something I never thought I could do with my illness that I did was: Be as happy in my life as I am. My life is hard, and I do deal with depression, but I am blessed and I have a wonderful family and wonderful friends and so many awesome things happening in my life…. even as depression touches it all and makes it hard to deal with, I am incredibly happy at the same time… which is an entirely weird feeling.

17. The commercials about my illness: Hmmm…. I know there are commercials out there, but I don’t have tv so I never see them. I know there is a great project out there called Could I have Lupus. I think fibromyalgia may have some commercials too? I’m not really sure.

18. Something I really miss doing since I was diagnosed is: being in the sun (at all) without it causing rashes, trouble sleeping, headaches, even easier sunburning than I’ve lived with all my life. I admit I’d been in the sun less and less leading up to my lupus becoming diagnosable… but the option was always there. Now I can’t even garden in the ground, it’s all got to be in flower pots and things that can be moved into the house or in the shade where I can care for them.

19. It was really hard to have to give up: being able to do what I want when I want to.

20. A new hobby I have taken up since my diagnosis is: crocheting

21. If I could have one day of feeling normal again I would: want to know ahead of time so I could travel to California and spend it at the beach with my family (my kids, Johnny, my sister(s- including inlaws) and my parents and cousins and aunts and uncles and grandmothers and whoever else) and and friends.

22. My illness has taught me: to be more patient with others (generally, still learning this one lol) because I don’t know what illness or other issue could be affecting them.

23. Want to know a secret? One thing people say that gets under my skin is: but you’re too young to have all those health issues. Lupus, endo, etc. don’t know ages. Actually… I take that back… pretty much everything I have is most likely to become active during reproductive years, and most likely to do so in women…. so they do know age… young ages. My age has both nothing and everything to do with my being so ill. Nothing because it doesn’t matter how young I am I do have these, and everything because I’m am in the age range that most of these things strike in (not counting allergies or depression)….

26. When someone is diagnosed I’d like to tell them: They are not alone and it is possible to live with all of this. I also wish I could give them hugs. It’s a hard road, even if it is livable.

27. Something that has surprised me about living with an illness is: I can’t think of anything, because I’ve been ill my whole life, I just didn’t have names for most of it until my 20s. I guess it would be the validation that having names for these things would bring.

28. The nicest thing someone did for me when I wasn’t feeling well was: Hmmm… are we counting all the awesome care and spoilage I get from Johnny? When he’s able to he makes special meals for me, he brings home surprises from the store for me when he can, all the care he gives me with taking care of things I can’t do. Otherwise…. cards and gifts that have been sent, especially the ones that have been complete surprises.

29. I’m involved with Invisible Illness Week because: Well I haven’t been as involved as I’d have liked since I’ve been super busy with medical appointments this week (including traveling out of state to see one doctor because the closest one in state is at least 6 hours away)… but I’m taking part because these illnesses affect so many people, yet so few people outside of those of us affected and our close friends and family members know about them. We’ve GOT to raise awareness! And we need understanding from people!

30. The fact that you read this list makes me feel: so special and so appreciative. The fact you took the time to read this means the world to me.

To learn more about Invisible Illness Week visit this site. If you’d like to do this meme, the blank form can be found here, and please leave a comment at the bottom with a link to your post about it if it’s posted somewhere that you can do so (like a blog) so that everyone can read it!

Im prepping for a trip (as I mentioned before) and the stress has my lupus going some, but over all, other than exhaustion (I still say it’s a combo of lupus and pregnancy) my lupus is about the same. I am so thankful for that. My endo and interstitial cystitis are both giving me issues on and off, but I expected that to continue.
Littlest still seems to be doing fine, no miscarriage, I should have an ultrasound done when I have my next appointment if I understand correctly. 🙂 Either way, things seem pretty even. I’m 8 or 8 1/2 weeks now. 😀 Every day it works out is another day further than I’ve made it before!
My shots are going well, Johnny has done all but one so far. The one I did (to prove to both of us I can do them and am able to do this trip as far as that’s concerned) left me bruised up, I pinched too hard and I was really uneven with pushing the hep into my skin, sometimes I was fast, sometimes I was barely pushing at all. I am able to do it though! 🙂 I am in shock, I’m terrified of needles, the thought of doing the shots still makes me feel sick, but I am able to do it! 😀 This is a VERY good thing. Thankfully even though we’ve proven I can do it (and of course could improve if I did it regularly) Johnny is willing to keep doing them, my dad will do them when I’m with my parents, and my cousin will do it while I stay with her and her husband, so I have a minimal amount of shots I have to do! That is a huge relief for me!
Later on today we have a nurse coming in through this program – Nurse family partnership – who will work with me through the pregnancy, then up until the baby is two years old! 🙂 She’ll be in weekly at first, then we’ll be having biweekly appointments after that until the birth. Once the birth happens we’ll meet weekly again for a bit, before going back to bi weekly. I am so thankful for the different programs in the area for pregnant women. I have been able to actually get insurance through medicaid, though it’s not fully kicked in yet; I am on WIC and getting check ups with them, as well as good food; and there is the nurse program. I think there was one other, but I haven’t heard back from them yet, so I could be mistaken (it’s been almost two weeks since I went and did my medicaid app and found about the other programs besides WIC)…. either way there are some great resources here that are helping a lot.

My bladder infection seems to be slowly getting better, I’m over halfway through the antibiotics now. I have plans to do a post about UTIs, IC and pregnancy… since it’s a muddled mess and involved in why I didn’t catch the UTI sooner (besides the fact I believe it to have partially been a med reaction).

My migraine is gone but I’m still having headaches… of course with all the crap in the air from the wind, and the pressure stuff that happens with these storms it’s not surprise that I’m having headaches.

My rash has cleared up, but I’m still having skin issues in that it did a lot of damage and drying to the skin, not just where the rash ended up, but the whole area around it, so I’ve been peeling some, itching a lot, and thinking I need to use some lotion on the area so that the skin gets moisturized again and the stuff that is dead will come off and the rest will hopefully go back to normal… that whole area feels REALLY odd right now. 😦

My lupus is back out of control…. I had a bit with this pregnancy where it was “in remission” I suppose would be the way to put it… I had a couple days where I was in pain, then I went on bedrest for the pregnancy and although I ached because our couch is uncomfortable and the way I use the mouse doesn’t help my shoulder out, I was not having lupus pain. I had a couple days after bedrest when I was still feeling pretty good, then about a week ago when the UTI really hit and I started really having signs of a reaction to the progesterone suppositories I ended up really ill again…. the dizzy spells are expected with pregnancy, as is the fatigue… the joint pain, the achiness, the migraines and the general feeling like crap… not so much.

The lupus stuff has sent my emotions spiralling even more out of control. I’m still all over the place (and with hormones and what has happened with my other pregnancies is it any wonder?), but adding the lupus pain back in when it looked like I might finally have a break from most of my pain other than some achiness and the normal pregnancy stuff has sent me into a bad place emotionally. With the pain rolling back in all the darkness did too… I had been so hopeful, but the pain, the med reactions and the UTI all happened close together and really is making it difficult to be in a good mood. I’m still excited about the pregnancy, and still hopeful it’ll work since I’m further than I have made it before, but I’m also really down about everything else. I never expected pregnancy to be easy… nothing else relating to my body is, but I still hoped that maybe I could get a bit of a break. And I hadn’t really thought it would happen until I got that time where everything was calm, I now feel as if things have been stolen back away from me, and it has really put a damper on things. Right now I’m just really hoping the ultrasound on Thursday goes well… I don’t think I could handle bad news there on top of everything else going on. I mean, I know I could, I know I’ll make it through, but I’ve had enough going on this pregnancy that I could really use some good news.

Before I say anything (and I’m guessing that at least to some of my readers this will give away what’s coming) I want to say to any face to face friends or family members who know us in person – if you are reading this news and haven’t heard it from me or Johnny personally please contact us before you get all upset, we have our reasons that this has been kept quiet, so please just let us explain and don’t start contacting other family members or friends to find out if they know, they may end up pissed off too, which is the last thing we need.

IFers and M/C sisters beware, this could be a tough post.

Ok…. the reason for my last post, and for my silence lately is that I’m pregnant. I’m currently almost six weeks along, and have known since the first Tuesday in the month. The last two weeks have been extremely rocky as I have had to go on extra hormones, I had super scary cramping… I also had the “normal” cramping and pelvic twinges and such that are just part and parcel with pregnancy, but I’m talking cramps that had me in tears and felt like the ones I’ve had with my past miscarriages. For those just joining in on the story this is pregnancy number 5 for me, no live births, which means 4 miscarriages so far (I hate having to add so far on there, but even with the treatments I’m still really scared this is going to end badly) and at nearly six weeks this is the longest I’ve ever been pregnant. Three of those miscarriages have happened in the last year – starting the day before Father’s Day last year, then one in October at 5 weeks (the only one I even had a suspicion of pregnancy with, also the longest pregnancy I had before this one), and one in March. The cramping got really bad over the first weekend that I knew I was pregnant (I wasn’t able to start my progesterone suppositories until right before the weekend, a couple days after the positive) and I put myself on bedrest. The following Monday I called my ob’s office and the nurse told me to continue the bedrest until I heard back from my doctor. A couple days later I still hadn’t heard back so I started really bothering the staff to get me an answer, they had another of the ob’s review my case and I was told to go ahead and go off bedrest. I was supposed to up my progesterone, but there just isn’t money right now (I’m working on getting on other insurance) and now that it is in my system more I’m doing better. Then, Saturday or Sunday I started feeling more and more like absolute crap. I think it was Sunday I had some leg pain (one of those side effects they warn you about as it could be a clot) and early Monday morning I started itching around my butt, so I scratched and found that the skin felt really odd, so I had Johnny look at it (this was during his lunch break thankfully) and there was a good sized rash going on. I also had been having some issues urinating, but the retention I was having was listed as a possible side effect, and the pain I was having isn’t unusual (especially since I got brave and tried to drink one of my favorite drinks a day or so before – lemonade) so I hadn’t thought anything of it. Johnny bought a baby “healing creme” for me and has been applying it and the rash looks a lot better, I think we are at the point that we can stop treating it, it’s not itching anymore and although the skin is still a bit discolored (I look bruised) it’s definitely healed up. Due to all of this they switched my progesterone from suppositories to oral, same med and dose just different way of getting it into my body. Hopefully this works and I won’t have to do any more switching of meds. They also told me to “drop by and do a urinalysis” and I replied with something along the lines of there is no dropping by your office… I’m an hour from you guys, so they sent me to our PCP office, which I did Tuesday (yesterday for me) morning when they were able to get me in. Once I got there they gave me a cup and I went and peed in it so they could run the urinalysis… it was pretty obvious to me when I was closing up the cup and putting it in the cubby for the lab that something was up… I won’t go into details, but it was really obvious. Johnny and I both had appointments, so we took care of Johnny’s appointment, after which his doctor looked at the results, said “you have an infection, does your ob want to treat it or should I”… I didn’t know so he gave me a rx (the one he always uses for pregnant women apparently) and I’m to verify with my ob’s office that it is how they want it treated and start on it. So it’s been an eventful pregnancy. When I haven’t been dealing with those things I’ve been pretty happy, but it definitely hasn’t been an easy couple of weeks, and due to my health and miscarriage history we’ve been keeping it pretty quiet…. even with the treatments they are doing (aspirin and extra progesterone) we’re still walking on eggshells and pretty nervous about the whole thing. I have my first prenatal appointment and ultrasound next Thursday, we’ll see what the results are… the u/s tech isn’t entirely sure she’ll be able to see anything at that point, but since I’ll be pretty near 7 weeks she thinks that there is a good chance.

I want to let my readers know I don’t know how much or how little this pregnancy will come up in my blog…. when I’m not sick (like with this infection) although the pregnancy is on my mind it’s not so much a topic of conversation for this blog because my AI issues seem to be in remission. Unfortunately the infection has made my lupus flare a bit more and me feel like crap, but that’s no surprise. I will be doing updates, I’m not sure how frequently. Any pictures will be in password protected posts and labeled so that no one has to see them if they don’t want to, as I know how tough it is to see baby bump pictures when you want one so bad and can’t get there. This is my space and I will post what I need to, but if it does get rough for you to see the posts please let me know in a comment or email and I’ll let you know when non pregnancy posts are up (with a link) so that you don’t have to keep checking my blog and seeing pregnancy news. I am wanting to write about the pregnancy, especially as things change with my health, but I also do know how hard it can be to read and am concerned about how the news will affect the friends I’ve made through this blog. I know on a forum/community I’m on that deals with all sorts of topics and has both fertiles and infertiles there is a pregnancy boom going on and we’ve had a couple of members needing to take a break, which … although I haven’t necessarily forgotten where I’m coming from, has made me think a bit more about what I’m saying… I want to share my happy news, and I do want to give updates in what is a high risk pregnancy situation, but I also don’t want to overwhelm those for whom this is a sensitive topic, so like I said just let me know!

I think that’s all my news for now…. Umm…. I can’t think of anything else for now.

I can’t take part in this because I am on narcotic pain pills… but after seeing it I wanted to draw attention to it for those of you who aren’t!!! (Plus with me it seems to fit more with Vulvar Vestibulitis, though I’ve heard some places that they are almost interchangeable)

Here’s a blog post that talks about a clinical trial for IC patients with generalized Vulvodynia, and here’s a link to the trial .. Please, if you can take part do so… more needs to be learned about both of these conditions, and the link between them, if there is one (which would certainly make sense to me)!!